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A Collaborative Approach to A Collaborative Approach to Measuring Service Systems for Measuring Service Systems for Children and Youth with Special Children and Youth with Special Health NeedsHealth Needs

Diane D. Behl, Adrienne L. Akers, and Richard N. Roberts

Early Intervention Research InstituteUtah State University

Logan, UT

Presented at the First International Society for Child Indicators Conference

Chicago, IL

June 27, 2007

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Purpose of PresentationPurpose of PresentationPurpose of PresentationPurpose of Presentation

Increase awareness of broadly-defined children and youth with special health care needs.

Promote six federal performance measures.

Describe participatory approach used for developing indicators.

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Children and Youth with Special Health Children and Youth with Special Health Care Needs (CYSHCN) are defined as…Care Needs (CYSHCN) are defined as…

those who have or are at risk for physical, developmental, behavioral, emotional conditions.

require health and related services of a type or amount beyond that required by children generally.

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Federal Performance Measures Federal Performance Measures for CYSHCN for CYSHCN

1. Families are partners in decision-making at all levels.

2. Children receive coordinated, ongoing, comprehensive care within a medical home.

3. Families and youth will have adequate private/public insurance to pay for the services they need.

4. Children are screened early and continuously for special health care needs.

5. Services are organized so families can use them easily and are satisfied with services they receive.

6. Youth with SHCN receive the services necessary to make transitions to adult life, including adult health care, work, and independence.

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The M&M ProjectThe M&M Project

Identify state-level measurement capacity

Develop meaningful indicators

Develop measurement strategies and tools

Pilot measurement efforts in multiple states

Report results and disseminate

Original MCHB grant from 1999 – 2003 objectives:

… via a Participatory Action Research Approach

Administrators & providers

Consumers/ Family Voices

Researchers/Evaluators

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Family Partnership in M&M was Essential to.....

Family Partnership in M&M was Essential to.....

Guide the development of the indicators, ensuring that they reflect family priorities

Ensure measurement tools were meaningful to families

Help interpret data as they are collected

Ensure that data findings are used

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M & M StatesM & M States

Oregon

Utah

ArizonaSouth

Carolina

Ohio

Vermont

Colorado

Iowa

Hawaii

Florida

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PAR Process Used to Develop Indicators

PAR Process Used to Develop Indicators

1. Initial list of approximately 100 indicators were identified from Literature Review and recommendations from experts in field

2. Ratings of top 5 indicators were obtained from 15-20 stakeholders in 6 states

3. Ratings of top 5 indicators were obtained via group consensus in each of 6 states

4. Ratings of top 4-5 indicators were obtained via consensus across 6 states

5. DSCSHN confirmed final list of indicators

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Example of Measurement Analysis for M&M Indicators

Example of Measurement Analysis for M&M Indicators

Data Sources For Whom and How Often Reported

Adequacy of Data Strategies for Enhancing Measurement

State CSHCN program family survey

Children enrolled in some of CSHCN programs (clinics); usually collected every 5 years.

• Full scope of indicator captured?

Add questions to capture indicators.

State Child Health Survey

Randomized household survey of Utah families.

• Data set reliable/valid? Expand sample size.

Consumer Assessment of Healthcare Providers& Systems (CAHPS)

CSCHN served via public & private managed care; collected every 2 years.

• Data collected with adequate frequency?

Work with Health Care Financing to add questions.

National Survey of CSHCN

Randomized household survey of CSHCN from all states; collected every 4 yrs.

• Capture population of CSHCN?

Disseminate results.

National Survey of Children’s Health

Randomized household survey of CSHCN from all states; collected every 4 yrs.

Disseminate results.

Outcome 2: CYSHCN will receive regular ongoing comprehensive care within a medical home.Indicator 1: % of CSHCN with a regular source of primary medical care through a primary care provider.

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M&M AccomplishmentsM&M Accomplishments

1. State teams expanded their partnerships to enhance systems building.

2. The indicators proved to be valid components to guide service system development.

3. States identified potential strategies to enhance measurement via data warehousing, expanding sample size of surveys, inter-agency measures.

4. The “Assessment to Action” Tool was developed for states & is available at championsinc.org, click on Measuring Outcomes.

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Future DirectionsFuture Directions

Increase use of existing data to monitor systems building progress.

Use data for social marketing and building partners.

Apply indicators to community-level measurement and systems building.

Increase measurement with under-represented populations.